As we begin a new year, it’s a natural time to reflect on the past. This year has been particularly interesting for me since I made the decision to retire from Paralympic Cycling and join the ADA Center in a full-time capacity. I was also able to be a guest on our very own podcast, recently! Today, I want to explain a little more about my background with a disability.
I experienced an injury to my left shoulder during the birthing process. I was a very large baby born from a mother who has a shorter than average stature. My mom is 5 feet tall, and I was born 23.5” tall at 11lbs 9oz. I’m sure some of you are thinking “Oh, your poor mother!” It was rough on the both of us. My shoulders were too broad for my mom’s anatomy and my left shoulder got stuck on my mom’s pubic bone. To save our lives, the doctor pulled on my head to get me out. This stretched the nerve bundle that leads into my arm, the brachial plexus, to be stretched and in my case, permanently injured. The resulting nerve damage can be considered a Brachial Plexus Injury (BPI) or Erb’s Palsy, as it is more commonly known.
There are a couple interesting takeaways I wanted to share. The first is that there were risk factors to my birth that I want prospective parents to be aware of. Large babies are common on my dad’s side of the family, but another risk factor for having a large baby is diabetes. My mom had gestational diabetes and later type II diabetes. Other than how large my mom’s torso became while pregnant with me, I understand nothing was done to anticipate a difficult birthing process. Although care is much better now than it was in the mid-1980’s, these risk factors remain and can still be neglected today. Another piece of information I learned from a nurse about this era in medical care is that insurance companies actively discouraged doctors from performing cesarean section procedures. In hindsight, it’s pretty clear I should have been born using that procedure given the difficulty of my birth. I was angry for a period of time that this type of policy could permanently impact my life, I won’t lie. I eventually came to the realization that holding onto that anger did nothing for me, so I dropped it like a hot rock. I do believe that it’s perfectly ok to question the decisions of professionals when there is reason to do so. Professionals are just people, and subject to error in judgement and outside influences like anyone else. Mistakes do not necessarily make someone unfit or incompetent as a professional, but where decisions can permanently impact a life it’s perfectly fine to question their process.
Every BPI will be unique to the individual in how it affects their arm, shoulder, and hand. My left arm is a couple inches shorter than my right, and my hand is a full size smaller as well. I can use my arm, but my strength and range of motion are very limited. I also lack most sensory feedback. I can feel the pressure of something touching my skin, but that’s about it. Here’s a way to see what it feels like to have a partially paralyzed hand: Sit at a table and place one hand on the table, palm-down, and fingers fully extended. Take the other hand and make a fist, then place your fist with your mid-digits on the tabletop. Press down onto the table with your fist as hard as you can, really lean into it, then try to open your hand. Don’t slide your fingers across the tabletop, just try to open your hand like the table isn’t there. That’s basically what it feels like to try to open my left hand. Now that it’s winter, another method is to put bare your hand into snow for 2-3 minutes or so. This is not comfortable nor should you risk getting frostbite. When you start to lose sensation in your hand due to the cold, that’s more or less what my hand feels like all the time. If you try to move your fingers rapidly or do something that requires dexterity like typing, that’s around the same function of my left hand. You can also just dunk your hand in ice water for the same effect.
When I was growing up, I wasn’t conscious that I had a disability in my arm. My parents didn’t treat me differently on a day-to-day basis, and I figured out how to function on my own, developing several compensation patterns and techniques. One thing that I wasn’t allowed to do was participate in sports. My mom told me I would hurt myself. I didn’t understand at the time, but she meant that because of my arm she thought I would get hurt playing sports. This is a case where I was held back not by my disability, but by the attitude about disability from someone else. I’d encourage anyone to support their children’s interests regardless of the worst-case scenarios you think may happen. There are so many positives at stake for a child in developing social skills, physical health, and creativity when they have an interest.
There’s a lot more I’d like to share, but that will have to wait until next month! On our podcast, I mentioned a situation where Title I really could have made an impact on me in a previous job. I will expand on that next topic next time. I hope everyone had a fantastic holiday season and is starting the new year in a good place.